Patient – Marilyn R. Gardner

In an appropriate follow-up to yesterday’s post, Jan Klingberg takes us into the realities of hospice care. Hospice care is often misunderstood and I’m grateful to Jan for giving us first hand information about this important service.

Kristine’s husband, Gerry, returned home from the hospital with end-stage cancer after his doctor bluntly told him to get his affairs in order. The family panicked. How would they manage? Especially with twin preschoolers at home.

During many years as a communications and fundraising professional for a hospice program in Illinois, I have seen firsthand the challenges of life-threatening illness—for the patient and family alike. When treatment becomes futile at best, hope for a cure disappears and hopelessness can set in.

But what if instead of being hooked up to machines in the hospital or going it alone at home, your loved one could be cared for in a program that would reawaken hope—a hope for comfort, peace and dignity …

Encircle you and your loved one with care and support tailored to your needs,
Arrange for the delivery of a hospital bed, supplies and medication,
Visit your loved one regularly to provide medical care and other treatment to ease pain and discomfort,
Be at the other end of the phone 24 hours a day, and
Support you when your loved one is dying and for months afterward.

Our hospice program became Kristine and Gerry’s lifeline that made their last weeks together bearable. A team of professionals and volunteers surrounded the family with a multitude of services and strong support. Medical care addressed Gerry’s pain; counselors helped Kristine journey through her despair over losing her husband; social workers helped the extended family work through some tough issues; volunteers ran errands and shared babysitting shifts; experts in children’s grief worked with the twins and coached Kristine. And even when Gerry’s pain soared out of control at home, he was able to spend a few nights at our specialized hospice inpatient unit where 24-hour nursing care helped stabilize him.

Were the family’s last weeks together easy? Of course not. But they were transformed into a manageable journey that allowed Gerry to die comfortably at home, his wife and kids at his side. He was reassured to know that after his death, Kristine and the twins would be carried through their grief rather than being left alone with their terrible loss.

In the years prior to my retirement last fall, I became aware of many stories similar to Kristine and Gerry’s. The overwhelming emotion of family members after the death of their loved one was gratitude—for providing support and restoring hope. And I don’t believe I ever heard anyone say, “We called hospice too soon.” If anything, many were disappointed that they had waited too long before engaging a care system that could surround them and their loved one with what they needed to live life to the fullest in the time that remained.

Hospice has been a lifeline to thousands of people around the world for decades. The modern hospice concept actually got its start in the late 1960s in England where specialized care for the dying showed dramatic improvement in symptom control. This new unique blend of medical, emotional, spiritual and psychosocial care—palliative care—comprehensively treats the person rather than solely the medical condition.

Then amid the phenomenal medical advances of the 1970s, dedicated healthcare professionals and community volunteers in the U.S. saw the need stateside for an interdisciplinary and compassionate approach to end-of-life care. From the first U.S. hospice program in 1974 to the current 5,000+ programs nationwide, hospice professionals have relieved pain and suffering day after day, year after year. My own family—mom, dad, aunt—were cared for by hospice programs in other states. Though they operate slightly differently from the one I worked for, they have the same core belief that drives the care they provide—everyone has the right to live with dignity until the last moment.

A long-time friend—a control freak who lived alone and had every loose end tied up—said when she became one of our patients and entrusted her care to my colleagues, “It is such a relief knowing that I don’t have to manage alone anymore. These people know what they are doing … they’re the pros.”

When a loved one has a life-threatening illness and the prognosis becomes months and not years … when the goal for care becomes comfort and symptom management … why not choose the hospice experts who promote quality of life until the very end of life?

AUTHOR’S NOTES:

The National Hospice and Palliative Care Organization (NHPCO) has a wealth of information about hospice care and can help you find a program near you.
The NHPCO service, Caring Connections, offers resources for advance care planning, caregiving and living with a serious illness.
A high percentage of hospice programs are certified by Medicare. This means that they have core services provided by a hospice team (physicians, nurses, nurse’s aides, social workers, grief counselors, chaplains and volunteers) and can receive reimbursement for the care of a patient who has Medicare Part A. Many private insurance companies and state Medicaid programs have modeled their payment systems after the Medicare Hospice Benefit, so the costs of care are covered for most patients who are eligible for hospice.

Hospice Definition (assistedlivingtoday.com)
Altering Body and Soul
The Myth of Death with Dignity
End of Life Care and Cultural Competency
Cradle to Grave – Health and Illness

"Dentist examining child's teeth. Interio... — Image via Wikipedia

As much as I pride myself on being a creature that is not “time bound” there are those moments when I wish that I operated more efficiently….in other words, I’m not always proud of being late.

Culturally based views of time have been the impetus for millions of cross-cultural conflicts – probably since the beginning of time. The conflicts are not pretty. The people on the “mañana” and “bukra” side juxtaposed between those with Swiss watches and German minds. The sun dials vs. the Swiss watches. Empires can rise and fall based on views of time, business deals can perish, relationships can sour, all because of time.

I am a sun-dial. I have already confessed to this in an earlier post. I have a loose view of time and one not-so-pretty conflict came at the dentist office.

To get the full picture of this story, one has to appreciate two things – how much I love being a sun-dial and how much I despise the dentist. When I am told to hurry and be on time, I am paralyzed. I have also had 5 babies naturally, coping with the discomfort of labor through good breathing and good support. I would rather have 15 babies naturally than ever have to go to the dentist. I realize that the word despise is not weighty enough for the way I feel. That dreaded question: “Did you floss?” And of course I answer yes, and with one look, they know that I’m lying.

But on to the story. It started with the dentist’s able assistant Debbie. She was perfect. Her teeth were even more perfect. They were the straightest, whitest, teeth I have ever seen. And I’ve lived in Arizona where Botox and white teeth are fairly common. Read on…..

“I’m Late” I announced rushing through the doors to the dentist’s office.“Yes you are” was the curt reply from Debbie.“Am I quite late or just a bit late” I was desperate to justify my ‘lateness’.

“You are late”. Three words from Debbie. She was diligent, she was beautiful and she had pearly white, straight teeth. My teeth are somewhat crooked and not so white and somehow all this made my lateness worse. I began to babble and felt myself growing hot trying to explain cross-cultural views of time. This was not the time or venue for a teaching moment.

This scenario had happened several times and although I wanted Debbie’s approval it was not going to come until I arrived on time.

I found that when I most wanted to get approval from this strange world filled with unrecognized cues and cultural nuance, I blew it even more. Like being on time, saying the right thing, ordering coffee. All seemingly simple, but like bringing snacks for soccer games, I would panic. For instance, in America you are supposed to deflect compliments. I didn’t know this. When someone gave me a compliment on what I was wearing I would tell them where I got it and how much it cost. In America when you are offered something to eat and you refuse, you are not usually offered it again. In the places where I lived you always refused the first time, and the second, and usually said “Yes, if it’s not too much trouble” the third time around. In America you come on time.

Like most conflicts we were both convinced that we were correct. She told me that I “was in Rome and should do as the Romans” to which I responded “But I’m an Egyptian in a Roman empire!” and she didn’t think I was funny. So we did what is important in cross-cultural conflict: We negotiated. Like all resolution of cross-cultural conflict, it took coming to an agreement in the middle. In this case the “middle” was the little reminder card that comes from my dentist letting me know that the exciting appointment is coming up. She agreed to set my time on the reminder card as a half hour earlier than it actually was. The first time using the system I was early. I would have been twenty minutes late if it was the real time but because the reminder told me that the appointment was earlier I arrived 10 minutes early. She was pleased and I was delighted. It worked well for a time. Then I figured out the system, arrived late, and war broke out.

Time for another round of peace negotiations between Debbie and I. What will the middle look like this time? No wonder the Israeli/Palestinian conflict is so complicated. It’s about a far more than teeth and time.